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Started the Radiation Process Today... Scared and Worried

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macdebbie
macdebbie Member Posts: 65

Well, I had my first "real" radiation appt today - did the planning. It was a little more difficult than I thought it would be as I haven't raised my hands that high above my head since the surgery or held them above my head for that long. I got through it though.

I was surprised to find they use permanent marker and stickers vs tattoo marks, but will tattoo at the next appt. if that's what the patient wants. I don't like being careful for of the stickers, and I would think it makes putting lotion/cream on the breast because you can't put it over the stickers. Can anyone weight in on that?

It was a process getting to this point. I went to see my BCS because I had some pain under my arm. I wasn't able to see the BCS, but the PA did an ultrasound and she didn't see anything there, but did find a fairly large seroma in my breast. She told me I could aspirate it or see if it would resolve, and she said she would probably aspirate it, but when she checked they didn't have anesthetic I can take (I can't have anything with epinephrine in it). So I waited, and put warm compresses on it, and still it didn't go down so I made another appt, again, the BCS wasn't available (but was in the office).

The PA did another ultrasound, thought it had gone down some, and I told her what the RO had said, that it needed to be "stable" before I started radiation. I kind of panicked because now we were at 4 weeks and if aspirated the RO wanted to wait 1-1/2 weeks to make sure it didn't come back so all the planning done wasn't off.

It's still there, but I went to the planning appt anyway and asked to speak with the RO. She examined me and said she thought it was fine to proceed, but it was my call. She said it's actually good to have some fluid there as otherwise there would be a dent where the tumor was taken.

Not that I don't trust the PA, I do, and she took pictures of the ultrasound to show the BCS and measured it, but I wish I had been able to see her. It's kind of annoying that she seems unavailable now that my surgery is over.

I'm not happy with this seroma still in me, and I don't know if I should keep putting compresses on it, because I don't want it to shrink and throw the planning off.

I wish I could stop worrying about all this stuff!!!!!!


Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
    edited October 2021
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    macdebbie,

    Radiation tats were traditional for many years. Some places have moved away from them completely, because many folks did not want permanent marks on their bodies and use Sharpies. In the whole scheme of bc treatment this is fairly minor but I know you are stressed right now so it probably seems like one more thing to deal with. If they are going to tattoo at the next appt., I wouldn’t worry about it much, even if a sticker falls off. Take care

  • Rubytoos
    Rubytoos Member Posts: 44
    edited October 2021
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    Personally the last thing I would want are tattoos to remind me of this time. I have slathered cream all over myself making no attempt to avoid the stickers over the markings for three weeks now and the stickers have not moved a bit. I shower everyday and soap that area. I had a small irritation under one and tried to lift up the edge and it was not budging. So basically you don't have to worry about that aspect of it. In fact this morning I actually pulled that same sticker off to let the irritated area breath and told the techs when I arrived. They said no problem, cleaned the area and reapplied another sticker.

    I had a hard time with the planning session, too, because I had not had the arm on my affected side held in that position for so long since the surgery. So I doubled up on my stretching exercises to prepare for the actual treatments. Those go super fast. I don't know if this is SOP but I asked for heated blankets on my arms and it made a huge difference in my comfort level. They placed one across my legs and one on each arm and I felt quite cozy.

    I know you are really worried about the seroma. I am not clear on how many weeks you are out from surgery. I waited 8 weeks to start and had a rather large seroma that had mostly resolved. My seroma has puffed up to twice the size it was when we started the treatments but it has not interfered with them. They did not have to readjust anything. I know that there are cases where substantial changes in "breast topography" can affect things, but your RO is your best source of information on that.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
    edited October 2021
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    I had rads to my bone met ten years ago. Tattoos were almost always used to mark the patient. Mine are sprinkled across my upper thighs and not visible to the world but I can sure see them and wish they would disappear. It’s not a major worry in the bigger picture but if temporary marking had been available I would have chosen that.

  • beaverntx
    beaverntx Member Posts: 2,962
    edited October 2021
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    I had to request tats. They were visible throughout rads treatment but I cannot find them now so apparently they were basically only on the surface and have"worn" off.

  • grandmaadams
    grandmaadams Member Posts: 39
    edited October 2021
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    I'm so glad I didn't have tattoos. I bathed and was careful to not "scrub" where the stickers were. None came off. One seemed to be starting to peel up, it was over the weekend, so I snipped a piece of the sticky part of a band-aid to anchor it till I went in for my next treatment. I was actually surprised that the skin under the stickers did not burn as badly as the rest of my skin. You can start with stickers and if you change your mind they can always do tattoos later.


  • alicebastable
    alicebastable Member Posts: 1,939
    edited October 2021
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    I had the markers and stickers. One of the things the technicians check at each session is that the mark is still there, and if it's faded, they just redo it and apply a new tape. I had only one area that developed a sensitivity to the tape, which they said was odd, but they just used another kind of tape and had to re-apply it more often.

    My re-excision was August 11. The RO said that was the date he'd count from. I had a total nephrectomy on the same side as my breast cancer on September 18th. The RO's nurse started calling in early October to get me scheduled for the set-up and sessions. I finally went in around the 20th for the set-up, and my body was not happy to be stretched out like that for an hour, but it had to be done. I started the sessions on the 30th or 31st, the absolute last date the RO would allow, and those first two weeks were the pits for the stretched-out position. But my body continued healing, and by the time the third week started, I was fine. Those regular sessions just take a few minutes except on Mondays, when they do a brief realignment before zapping, and a quick meeting with the RO after - so maybe 10 or 15 minutes instead of the usual 3 or 4. The worst part was the tediousness of going every day and feeling like I'd fallen into the movie Groundhog Day. My hubby bought me a pack of 33 scratcher lottery tickets and I'd scratch one after each session, which was a fun way to mark off each one. Try to find something little to do for yourself each day; it really helps.

  • salamandra
    salamandra Member Posts: 736
    edited October 2021
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    I got three tattoo dots. It was jarring at first because I've never got a tattoo on purpose and am unlikely too. It's been almost three years and it might sound weird but I kind of like them. They don't look too different than beauty marks. I don't notice or think of them 99% of the time but when I do, I feel kind of pleased with myself for making it this far.

    I also didn't have a terrible time with radiation though, and had the support of a lot of friends and community through that time.

    (I wasn't given an option, tattoos is just what they did. But for the boosters, they tried to use some kind of body paint that really just did not want to stay on my skin, even overnight).

  • spookiesmom
    spookiesmom Member Posts: 8,168
    edited October 2021
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    I’ve had both. I have to look hard to find the tats, just tiny dots. Neither time was really comfortable on the table, the techs do what they can. The markers are checked every week, pictures are done too. To check line up. The worst part, is Going. Every. Day. At least with chemo you don’t have to drag your tired self out of your recliner and do this.

  • ctmbsikia
    ctmbsikia Member Posts: 752
    edited October 2021
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    Glad tp hear you made it through the planning appt.! I had to do it twice as my 1st planning failed. I was treated in the prone position and have the tats. Also wanted to let you know that I also had a seroma and RO said OK to go ahead with treatment. I did not have it drained and it took months to go down and it's hard as a rock now. At the time I wasn't aware of all these "post surgical" and treatment changes but they happen even long after. Good luck with everything.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021
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    Hi ctmbsikia! Yeah, my planning appt, was originally for 11/1, then I panicked when I read a study by Dana Farber that said after 6 weeks recurrence rate goes up by 19%. IF I had been able to talk to the RO, she would have told me as she did yesterday that with a tumor as small as mine and 0 LN involvement, a couple weeks don't matter.

    I don't know why it's so hard to talk to the docs themselves, but I guess they are just too busy. I wasn't happy when I mentioned my BCS's PA told me that the BCS would talk to the RO, and when I mentioned it to the RO she looked totally confused and said she never talked to her, she just got a message that the BCS thought it was OK to proceed with radiation.

    She did step in before my session and examine me, and said she would be fine moving forward, that the seroma actually helped the scar not sink in by filling up the tumor cavity. I told her it was still painful and she said "Oh, well, you're always going to have some pain there." Oh, no one told me THAT before!

    So yes, all these little things that happen. I'm trying to go with the flow and not get stressed about things because there are SO many things one could get stressed about. But it's not easy. I'm a Type A person naturally who hates feeling out of control and like I have no input into situations, and I want to be educated so that I can advocate for myself when necessary.

    I was trying to avoid the "rock hard lump" in my breast forever, but I guess if that's the worst that happens, so be it.

    It's quite a learning experience! How did you "fail" your first planning appt.?


  • ctmbsikia
    ctmbsikia Member Posts: 752
    edited October 2021
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    It was the stress of radiation treatment that brought me to join bc.org. I needed answers and support. I felt like I was a number. Once I got rolling though, it went well. You should be seeing the RO or NP once per week. I was leaving one day and the nurse said, oh wait you have to see the doc. Gee, thanks for telling me this now! I was clueless but lots of reading and everyone here were so helpful.

    I was treated at the local hospital. One machine there treating all different cancers. It was a logistical nightmare fitting all these patients in everyday. Long wait times, cancelled and rescheduled appointments. The techs, the RO, and the nurses were excellent considering all they had to do everyday. My 1st planning was to be on my back with the scuba gear (breath hold technique) When they did the simulation the beam was hitting my right breast. I was lying there with all these people around me discussing what to do. By this time, I had learned about left side and prone maybe safer for heart and lungs. So I asked if we could try this different position. RO agreed, and we started over. I was going on 10 weeks post op, which as you know was worrisome. My 1st treatment was at 9:00 at night. That's how long of day they worked.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021
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    ctmbsikia, thanks for your story. I had it in my mind that radiation would be less stressful for me that the surgery way. I'm finding that not to be the case...

    What did you mean about left side and prone being safer? I had read about prone and asked about it in my consultation, and my RO said that was more for women with pendulous breasts.

    Yesterday I asked the tech about protecting my lungs and my heart, and she said we'' your heart is on the left side and your radiation in to your left breast, but talk to the doctor, she'll come in and check things before you leave. I did ask her and she gave me the same answer.

    I asked her about the lungs and she said a "sliver" might get treated. Now I've read about breath-holding techniques. Is it too late to bring that up? I want to do everything possible to protect myself. They are doing the planning today and all of next week (someone else is doing it as my RO is away at a conference) and my simulation appt. is scheduled for 11/3.

    If they deem breath holding appropriate will I need to do the planning over?

  • tb90
    tb90 Member Posts: 279
    edited October 2021
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    At this point you are going to need to have some confidence in your medical team unless you are prepared to delay and go elsewhere. It’s good to ask questions, but there is more than one option to protect your heart and lungs. First and most importantly is the skill of your RO and secondly is the quality of the radiation equipment itself. Perhaps breath holding is used when equipment or skill is not ideal?? There is so much involved that we do not understand fully and advise from others at this time may be confusing and anxiety provoking. I personally know a RO and these are his explanations that I received 8 years ago. Yes, there may be some radiation to your lungs but every breast cancer treatment has some risk, including surgery. Please do not second guess or what if everything. You will have yourself convinced of a horrible outcome. As for tattoos, I can only find one, but it reminds me of the effective treatment I received and how thankful I am that my outcome has been so positive. Believe it or not, this whole ordeal will soon just be a fading memory. All the best

  • ctmbsikia
    ctmbsikia Member Posts: 752
    edited October 2021
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    macdeb, you should be OK without doing the breath hold as your right side is getting treated not the left. Mine was the left breast, and the 1st simulation the beam was going past my little tatoo and into the right breast. I never asked how many patients this happens to, maybe I was a fluke? I had a couple of visitors to the treatment room too since they don't normally do the prone position and they wanted to learn/observe.

    They really know their stuff, I think you'll do fine.

  • reflection77
    reflection77 Member Posts: 3
    edited February 2022
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    Any info on how long AFTER mastectomy one can start Radiation?

    I have read 12 weeks should be the maximum time to wait.

    Also, if in grey zone, how do you decide on taking this treatment if

    two radiologists disagree on whether to proceed?

    Good luck to all.

  • gb2115
    gb2115 Member Posts: 553
    edited February 2022
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    I have the tattoos and didn't find them to be a big deal. I had stickers over them at first. I think trying to keep stickers on would have stressed me out. I also get adhesive allergies pretty easily, so there is that!